LDA President’s Weblog- Beloved Advocate Lucy Barnes aka Tincup: You’re Missed

LDA President’s Weblog- Beloved Advocate Lucy Barnes aka Tincup: You’re Missed

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We miss you, TC
Over the a long time, I’ve been lucky to work with a few of the best folks I’ve ever identified. These are the individuals who have been preventing towards influential people stopping the prognosis and therapy of 1000’s of Lyme sufferers—as a substitute must be working for individuals who have helped present or allow therapy.

One of many humblest, bravest, brightest individuals I’ve identified—and an expensive buddy—is Tincup, aka, Lucy Barnes. I’ve had the best respect for TC, (how I knew her greatest). She was very grass roots and didn’t search to have a big group, however labored totally on her personal, generally partnering with different Lyme teams or advocates throughout the nation. She was no nonsense and labored day and night time, when sick or much less sick, to research all avenues to cease the perpetrators who deny continual Lyme disease. We frequently talked properly into the night time to hash out what priorities wanted to be addressed and the way. She had a manner of speaking you into doing one thing you actually might not have needed to do. As Teddy Roosevelt stated, “converse softly however carry a giant stick; you’ll go far.” She spoke softly however you knew the stick was again there someplace…

She was all the time optimistic, sensible, and an actual drawback solver. Sufferers contacted her to assist discover docs who would deal with them, to determine learn how to get cost from insurers for his or her therapy, and to seek out out the place to go for assist if they’d no insurance coverage. She labored laborious with different Lyme teams to form public coverage, which has not been favorable to therapy for Lyme sufferers. Regardless of that, she nonetheless labored in good religion with the federal government to attempt to change minds. By means of that, she was all the time nice and had a humorousness.

I keep in mind after I sat on the HHS Tick-Borne Illness Working Group in DC. She signed up as a member of the general public to talk nearly at one of many conferences. She offered to us in her honest, down-to- earth, method the issues sufferers had been going through, and immediately, there was a loud interruption and roosters had been loudly crowing. Nobody knew fairly what was occurring, and TC made a joke concerning the roosters outdoors her residence becoming a member of within the assembly to have their voices heard concerning the injustices of Lyme. She was not flustered in any respect, and later, she despatched an apology e mail to authorities members, as a result of that was her nature. However she heard again from the officers current on the assembly. They stated that it made their day. After I hear about roosters or hear them crowing, I all the time take into consideration TC and the Lyme rooster-advocates.

Regardless of generally daunting opposition, TC by no means backed down. In our many conversations through the years, more often than not, we had been in settlement as to learn how to proceed with a Lyme concern. If we didn’t agree, we labored it out and both selected separate paths for that concern or labored collectively in the long term. On Lyme points in Maryland, the place she lived then, she was very educated. For numerous causes she herself didn’t really feel comfy educating the Maryland legislature on a specific Lyme concern. She felt I might greatest characterize the Lyme sufferers in that State. She educated me to the federal government positions in Maryland and persuaded me to journey to Maryland to go earlier than the legislature as a substitute.

She will probably be sorely missed by her household, associates, Lyme teams, Lyme sufferers and physicians. A humanitarian extraordinaire who fearlessly confronted the evil confronted each day by these with Lyme, she by no means backed down and all the time adopted by. TC all the time exhibited compassion and humor to these in want.

Transferring ahead, I’ll all the time attempt to preserve these attributes in my Lyme work understanding that someplace, TC is there. I can hear her little giggle now at 2am, then telling me, “get busy, there’s extra work to be finished and you want to do it!”

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